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While research is cautiously taking its course, CCSVI-operations are right now industriously performed at some sites, and there will be more to come.
People ask themselves, why wait any longer? You would want a treatment for a broken leg immediately, why not for an obstruction in the venous vasculature? Probably, something like that can't be good in itself. Furthermore, Zamboni may have picked up the right idea concerning ms, an idea, that had been out there for more than a century, but had been ignored for some reason or another.
As things stand today and for a considerable amount of time to come, one has to decide for oneself wether or not it is reasonable to undergo an operation as soon as possible.
To be a prudent one, this decision has to be based on facts. There are facts at hand, empirical facts. There are reports of those, who already underwent an operation to remedy their CCSVI.
The significance of these reports has been recognized. The need for a coherent structure of these reports has been recognized as well. There is a 'CCSVI Tracking Project' on this website. There are other websites addressing this issue likewise.
It would be useful to join individual reports in one place. This would avoid redundancy, and allow for a better judgement on wether these reports may be representative or not. Although the problem of different languages will partly persist (non-structured comments), the questionary can be made multi-lingual – and should be elaborated.
This would provide with neatly arranged empirical facts.
bonfire

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What concerns me is when people who have had the op notice that their symptoms are not changing. Where does that leave them and others who have similar symptoms to them? Does it point to some other cause for their illness?

Daisy3 wrote:What concerns me is when people who have had the op notice that their symptoms are not changing. Where does that leave them and others who have similar symptoms to them? Does it point to some other cause for their illness?

There is a lot we do not know and will probably not know for a long time to come.
There had been an open heart surgery to remove a dislodged stent. One patient (Holly Shean) even died after an operation when hemorrhage occurred some time later – the cause is not unequivocal, but it happened.
It is always useful, to think outside the box. Researchers should do so, but we as well. Our view may be narrowed by hope and, perhaps, conspiracy theories. It is necessary to view all facts available, especially those which may challenge the personal concept of what is going on now.
An empirical approach makes sense in twilight. What happens to those, who undergo a CCSVI-operation in the actual state of affairs? How many win, how many lose? What could be won, and what could be lost?
Research is looking for causalities. Affected people are looking for an improvement of their situation, of their 'quality of life', whatever causality may bring it about. A long-term continued pre-post comparison on a meaningful basis - comprising a representative number of pioneering patients - may help others to come to a well-founded decision for themselves. This is the reason why of my suggestion.

Fixing stenoses caused by CCSVI theoretically stops progression of the disease, it doesn't fix existing neurological damage. Your body may be able to reverse some of the neurological damage by itself but honestly I'd bet long-term we're going to need some sort of stem cell treatment for that.

Daisy3 wrote:What concerns me is when people who have had the op notice that their symptoms are not changing. Where does that leave them and others who have similar symptoms to them? Does it point to some other cause for their illness?

Remember that the veins themselves are the vehicle by which damage to the brain and spine occur, getting rid of the vehicle doesn't get rid of the damage. One of the biggest questions is how the body will heal itself, will it heal itself. Is healing/recovery dependent on the individual's immune system and other individual/environmental conditions? Will younger individuals show more dramatic recovery after a liberation procedure? I'm convinced that the narrowing/obstruction of veins in the brain and neck are the culprit of many MS symptoms, what I'm not convinced yet on is if CCSVI is the cause of MS, or if it is a different condition with a very high correlation rate to those with MS.

Toss out the idea that probably the least controversial and most easily tracked variable is whether or not patients have fewer relapses after than they had before treatment. Each patient serves as their own "control" for the purpose of analysis by comparing status before and after treatment.

We could look at drug trials which rely on this to see how they define relapses, ie, are they self-reported, or ones which require some sort of medical treatment.

The question would then be if there is a relapse, has there been restenosis.

We could easily put together a Google Sites website and use Google Forms/Spreadsheet to track this without including identifying data.

I think, though could be completely wrong, that this approach is simple, defensible and comparable to what has been done in a number of MS drug trials. Any other measure either requires expensive examination, ie, MRI's, or is quite subjective and couldn't be tracked around the world.

A nice feature of using Google tools for this is you can provide multilingual support.

We could also provide a key statistic, ie, something like Relapse Free Patient Months since Treatment that would be a single measure of the effectiveness of CCSVI.

There are clearly many more questions to be researched, but if the goal is to provide worldwide tracking of the success of CCSVI, I think something like this might work. It won't require approval of any "authority" or funding. It can be entirely patient-directed and managed.

Squeakycat wrote:Toss out the idea that probably the least controversial and most easily tracked variable is whether or not patients have fewer relapses after than they had before treatment. Each patient serves as their own "control" for the purpose of analysis by comparing status before and after treatment.......We could also provide a key statistic, ie, something like Relapse Free Patient Months since Treatment that would be a single measure of the effectiveness of CCSVI.......There are clearly many more questions to be researched, but if the goal is to provide worldwide tracking of the success of CCSVI, I think something like this might work. It won't require approval of any "authority" or funding. It can be entirely patient-directed and managed.Happy to volunteer to put the software together if this makes sense.

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